The one about the TAPS support group

It’s a quick update, I know.  I’m actually trying to be good and stick to my scheduled blogging times (for now), and I’ve been doing sort of well with it.  I’ve done a bit of tweaking, I now have my own domain and am slowly working now towards upgrading and building a bit more stuff around the site.  I mean, I NEVER expect to take off and all that, but hey, when your google rankings are not bad, you take advantage of that and make things look pretty. Continue reading The one about the TAPS support group

The one about the birthday fundraiser..

At the bottom of this post there are links to a fundraiser.  All proceeds go directly to the TTTS Support Team so that they can continue their amazing work with grieving families. Thank you in advance for your donations!

On the 20th of January, I turn 40.  Crazy, right?  I mean, 40 seems like you should have everything sorted out and be a responsible, mature adult and all that shit.

Seriously, no pressure.  None at all.

Continue reading The one about the birthday fundraiser..

The one about the difference between TTTS and TAPS

You get so much medical jargon thrown at you when you’re diagnosed with a disease like TTTS and TAPS – and sometimes it’s really hard to process it.  There’s a lot of medical terms and it’s quite overwhelming.  People start talking about DVP’s and MCA’s and cord flow and start talking about amnios and lasers and SFR … it’s confusing and overwhelming.

For the purpose of this post, I will only be referring to identical twins who share a placenta. There are always exceptions to every rule, but the key to this post is simplicity.  So on that note, I am specifically referring the most common denominator – identical twins, sharing a placenta. Continue reading The one about the difference between TTTS and TAPS

The one about TTTS Awareness Month

Hello again! It’s that time of the year where I campaign relentlessly for TTTS and TAPS awareness.  December is a special time of year, where emotions take the better part of me and my passion for spreading awareness increases.

Key Dates for us this month are :

December 1 – the start of TTTS Awareness month.  This year I’ve helped with a campaign for the NVOM, a new challenge as this has been testing my Dutch skills!

December 7 – World TTTS Awareness Day.  I have a lot of respect for Mary Slaman, who has tirelessly campaigned since 1989 and founded the TTTS Foundation from her own experience with this disease.  I would love if everyone who reads my blog would light 2 blue candles on this day to help commemorate the lives of babies lost to both TTTS and TAPS, or wear blue.

December 12 –  Celebrating the 4th birthday of 2 incredible little ladies who defied overwhelming odds to be here today.  Emmy and Tilly are strong, smart and energetic girls who thanks to amazing research and care, are here with us today.   TAPS is the silent killer in the TTTS family – there are no external signs of this disease and can only be suspected on ultrasound.   We are so thankful that we had forward thinking doctors and the LUMC on our case.

December 24 – An amazing day for us.  On this day, our girls were deemed strong enough to move to our local hospital from Leiden.  It’s also Christmas Eve!!

Please, I urge you to make a donation to either your local children’s hospital, or one of the following TTTS charities for Emilie and Mathilde this December.  Follow my facebook page for information coming out in both Dutch and English and share!

  1.  TTTS Support Team – Sending grief packages to parents who lose babies to TTTS.
  2.  The TTTS Foundation
  3.  TTTS Australia
  4. Willem-Alexander Kinderfonds
  5. Your own local children’s hospital fund.

The one about D-Day…

Today is the 25th of October.  Just another autumn day for most people.

4 years ago, at around 10am, this day took on another meaning for me.

I went to my regular checkup, and found that baby A had barely any fluid, whilst baby B was swimming in her fluid.  We had suspected, then confirmed later, TTTS.  This day was horrible – I had so many ultrasounds, talked to many doctors, including one that told us we should make funeral plans for our babies.  The next few days were spent in shock and tears, as we came to grips with what was happening.

Today is our D-Day.  Today it’s 4 years since we got the diagnosis that changed our lives, and makes us count our blessings.

I look back at everything we went through with uncertainty, and the ongoing fear of the worst, and I can’t believe that we came through with our sanity and sense of humour intact.

The constant travel to and from Leiden, the endless appointments, the sometimes brutal honesty of the situation really did take its toll on us.  Then the weeks in the NICU, followed by months of therapies, as well as getting used to having 2 babies in the house… I seriously don’t know how we did it.

I know I make light of the situation at times, but please don’t ever think I don’t take what happened to us seriously.  I wake up each day and am so grateful that I am in this country, that I had access to the best doctors and the researchers. I’m acutely aware of how lucky we are. Every day I see new cases and I see stories that are so similar to mine, and yet so many different and sometimes sad outcomes.

4 years has taught me patience.  It’s taught me that my writing is important.  It’s taught me that it’s important to share my story.

I’ve met some awesome people and met some amazing friends on this journey.  I hope I’ll meet some more.  I love using my voice and my writing to help people understand my journey.

So here’s to another 4 years of memories, and facing each October 25th and staring it in the eye 😉

This is what 4 years of memories looks like (well, this is half of a box. I have another box as well).

The one about the Wikkelkinderen…

I hinted a while back that I was working on a story that was a slight deviation from my usual style of writing – and it was published today on Amsterdam Mamas – a website dedicated to parenting in the Netherlands.

The story was my story, intertwined with a fascinating story behind a painting in a castle, not too far from my house.  However, the painting is significant to me. Continue reading The one about the Wikkelkinderen…

The one about the vaguebooking LUMC post

I kind of vaguebooked yesterday about what was going on and why I was at the LUMC, and also to my friends who mentioned that I didn’t sound ok with what happened yesterday – I want to reassure you I am fine. Thank you for the messages and the love xx

Continue reading The one about the vaguebooking LUMC post

The one about the perfect gift …

Warning – this post contains images of placentas. If your stomach isn’t so great, time to move along … 😉

Oddly enough, this post isn’t about my poor, long suffering husband ;).

Over the years, I’ve developed a unique relationship with our research doctor, all based on the tale I told about the girls placenta. (It’s worth the click. Really).  I share updates on the girls progress and catch up on the occasion we’re visiting the LUMC. Continue reading The one about the perfect gift …

The one about celebrating 3 …

Dear  Monsters,

Today you are 3.  It’s not been an easy road to get you this far,  fate tried to take you from us early on.  You’re tough cookies though, and you fought and showed your courage from the start.

I can’t tell you life is going to be easier now you’re 3.  You’ve come so far in the past 3 years, but you still have a long way to  go with catching up to your peers. I know you’ll do it, but no matter what, I’m going to pick you up when you fall, and turn you in the right direction  when you’re lost.

3 is tough. You guys think you’re big girls now, and I still call you my babies.  You are my babies though, and you always will be.  I won’t forget holding your tiny hands inside the incubators, or  that first precious cuddle we had after you were born.  Even though you’re big girls now, I’ll still try to cuddle both of you at the same time like used to.  Just don’t wriggle too much.

The road ahead is unsure, monsters.  We don’t know what the future holds for you, for us, for anyone.  You can be sure that I’m going to be  with you on that road,  making sure that we clear any obstacles together.  We’re a good team, you monsters and me.   We fight together,  and we  charge through life  like bulldozers.  We’re a little crazy, but when you’ve been down our road, crazy helps us stay happy and healthy.

 So here’s to you, my crazy, happy, healthy little monsters.  3 years has flown by, I can’t wait to see you enter your 4th year in the same way you approach life – with enthusiasm, love and a touch of craziness. xx

Love,

Mama.

The one about finding people who get where you’ve been …

Let me be the first to say – this is by no means dissing any of my existing friends, especially those who are close to me and have been by my side throughout everything.  You are all wonderful, and I value you all.

3 years ago, I was struggling with the TTTS/TAPS diagnosis, endless doctors appointments, not knowing if my children would live or die.  I was in a country where I barely spoke the language, with only my husband knowing the full extent of what was going on, and our parents to a lesser extent.  A lot of my pain and hurt I hid from public view (this is part of who I am) and internalised.  On top of that, being part of this mysterious 10% that got a condition that not many people understand, and not being able to find good, reliable and easy to understand information about – things were stressful.  And it felt like I was alone. Very alone.  16,000 kilometres away from my family and friends, and very little emotional support. Continue reading The one about finding people who get where you’ve been …